HOPE is our Driving Force

In this year filled with so much uncertainty, HOPE provides us with the energy and determination to keep moving forward. Here’s what gives us hope!

Be Cool to Oneself

Cyprian Katongo encourages others affected by ectodermal dysplasia to be who they are and not give in to the bullies who may diss them. Whether you live in Africa, the United States or somewhere else, he has a message of hope for you.

Jeronimo, Our Teacher

Jorgelina, a mother in Argentina, was shocked and sad when one of her twin sons was diagnosed with ectodermal dysplasia. As an English teacher, she decided to learn everything she could. But, it was her son, Jeronimo, who became her best teacher and changed her attitude.

We Should Love Our Lives

Cyprian Katongo grew up in Zambia being bullied and dissed for having hypohidrotic ectodermal dysplasia. He endured the pain and asked God, “Why do I have this condition?” Find out not only how he endured but how he has triumphed and is sharing a message of love and hope.

Diagnosed Over the Phone With Ectodermal Dysplasia

When Mason Langefeld still had not developed any teeth by his one-year-old check-up, his mom, Renee, decided to call a local dentist. He asked her a few questions that finally pointed them toward answers and a resource to help them care for their son. Read how they successfully fought their insurance company to pay for their son’s dentures.

Evan’s Story – Part II

(Editor’s Note:  The following story is part two in a series written by Karen Forman, the mom to an adult son affected by hypohidrotic ectodermal dysplasia. Read part one.) By Karen Forman                 “Life isn’t about waiting for the storm to pass. It’s about learning to dance in…

Evan’s Story

By Karen Forman My favorite quote of late has been Life isn’t about waiting for the storm to pass.  It’s about learning to dance in the rain. Thirty-three years ago, I was not that wise.  Now I dance. Evan is a smart, engaging and talented adult with a unique beginning into this world.  So, Evan…